I have a question for all you late diagnosed adult.....

Thinking about it it might be polycystic liver disease not kidney

Yes sorry I could have been clearer. As far as I am aware Huntington’s is caused by s single gene which you either inherit or you don’t so there is a blood test for it. Similarly there are a couple of genes linked to breast cancer and polycystic kidney(?) disease and maybe more now.

I realise I may have misread here - do you mean tests for autism like there are tests for Huntingtons?

Taltunes said:

I doubt we’ll ever have a test for all cases of autism like Huntington’s say.

I knew Huntingtons is a neurological condition but I didn't think it was part of the autism spectrum - it has genetic origins similar to autism but a different pathology from what I recall.

Can you supply some links for that please? It would be interesting to understand,

Yes, I did go on to say not yet and possibly only for certain types of autism. I still think there is a nurture element as opposed to a nature element in some cases of autism so I doubt we’ll ever have a test for all cases of autism like Huntington’s say.

Taltunes said:

- there’s no blood test for instance that says whether you are autistic or not.

It looks like we are getting closer to one:

https://www.spectrumnews.org/news/genetic-testing-autism-explained/

Autism is primarily a genetic condition: Most of the risk for autism comes from genes1. Mutations in more than 100 genes are known to lead to the condition.

There are four types of tests that can detect these mutations, as well as structural variations that may lead to autism. As researchers learn more about the genetics of autism, the tests have become more informative: More of the mutations they find have ties to autism and to known health consequences.

To be fair diagnosing autism is sill subjective instead of objective - there’s no blood test for instance that says whether you are autistic or not. (Or at least not yet and possibly never or only for certain types of autism?) it’s probably easier to spot autism in the context of diagnosing whether someone is or is not autistic where you can go through questionnaires / checklists etc than in a general therapy situation where lots of things could be the cause and probably more likely than autism as well.

Good to see you again, hadn't seen you around here for a while (although I've been an intermittent visitor here myself lately). I hope everything is OK.

Great description of it.

I have an early diagnosis but the dam bursting explains so well. So glad a lot of us share the same feelings with this.

By the way I love your profile pic! ^^

I think for me it was like a dam finally breaking. The energy reservoir to 'masking' ratio was reaching a tipping point, and then some life events in my early forties did the rest. I'm still rebuilding myself, but I have the advantage of way better self-knowledge now. Was/is there imposter syndrome intermittently in the mix? 100%. - that is, when conditions are not challenging me. As soon as they are (and it doesn't take too much!), it's 0% doubt instead. And those are the times we need to remember. And the expert report that confirmed 'diagnosis' doesn't magically vanish each time we have a wobble triggered by neurotypicals being unable to understand our lived experience.  

Yes, unfortunately, the lack of awareness of autism extends to many clinicians as well.

I was even seen by a psychiatrist once (although he was weirder than I was) and had two years psychotherapy. I can remember the psychotherapist saying at least I was not autistic only to be diagnosed as autistic 10 years later.

I wasn't diagnosed until I was 59 years old. I was only diagnosed because I realised that I was autistic and sought a diagnosis. I had not realised that I was autistic before this, because I had no idea what autism was really like and I had always just about managed to cope in society. Previously, the only things I knew about autism were: 'the uncommunicative child lining up toys', 'the artistic or musical savant', 'Dustin Hoffman in Rain Man' and 'Sheldon Cooper in The Big Bang Theory', and I was not really like any of these - well, OK a bit like Sheldon Cooper, but nowhere near as extreme. I sometimes react quite negatively to people saying that 'autism awareness' needs to be superseded by 'autism acceptance' etc., because if there was more awareness about autism it would not have taken so long for me to realise my autistic identity. I'm sure that this applies to many other late, and undiagnosed, autistic people as well.

Yes, I was probably relatively fine until I started my first job. I drank a lot when I was at university but so did most students in my day so at the time I didn’t think much of it but with the benefit of hindsight I was probably self-medicating.

I've thought about this a lot and honestly I think I just got lucky and went to a secondary school that was a really good fit for me. I liked having a regular timetable and I was good at enough subjects to stay out of trouble. Didn't have many friends but not many enemies either. It was a grammar school full of kids desperate to go to university so mostly people shut up and got on with their work, which created a nice quiet environment. I loved exams because each one was three hours where I could sit in silence and solve interesting puzzles. So even though I'd been labelled "shy" since early childhood and it was obvious I wasn't normal, I was doing very well on paper. It was only with the chaos of adulthood that I started to struggle, and even then, only when COVID threw off my routines and forced me into far more contact with others than I'd had before that things got extreme enough for me to realise it wasn't just anxiety I was experiencing. As soon as I picked up a book about anxiety in autistic adults, everything clicked.

I was only diagnosed at 50 (and diagnosed as bipolar at 53). It wasn't really a case of anything big happening to me though. I was sent for some counselling (I have had counselling of one form or another off and on since I was 26 (?) ) and after two initial diagnosis sessions it was the counsellor who said she couldn't help me because she thought I was autistic. I must admit I then pursued a diagnosis as much to prove the counsellor wrong although in the process came round to accepting that I probably was autistic and more to the point my dad had definitely been autistic. the diagnosis explained a lot of areas and things I had struggled with during my life up to that point - arguably this has been one of the main benefits I have obtained from my diagnosis. i personally don't think I cope any worse than I did when i was younger although I am discriminated against a lot more as I get older both on grounds of my age and because of my autism and bipolar - unfortunately because of the gaps in my cv I have to disclose my conditions to explain the gaps but as soon as I disclose my conditions I rarely hear further from employers.

Your story is so similar to mine.  I only started displaying "disruptive" symptoms around the age of 15, but I was always "different" to other kids. I think that my ability to "tolerate" the outside world reduced as the levels of pressure/responsibility increased, and this caused my "disruptive" symptoms to increase.

My GP (who is obviously a mental health expert /sarcasm) immediately diagnosed me with depression & anxiety and prescribed antidepressants.  20 years on, my symptoms have worsened due to increased despite my medication increasing.  I finally managed to advocate for myself and requested an assessment referral - low & behold, I have been diagnosed as autistic with ADHD, and the psychiatrist confirmed that the majority of my symptoms are traits of these two conditions.

I think my symptoms have progressively worsened due to progressively increased expectations. Social media is a curse for this, as I am always comparing my life "progress" against other people :( 

Also, if anyone can provide advice on how to stop harmful stimming, and replace it with better stims, I would be very grateful! I skinpick too, and my body is covered in scars and open wounds. The fact that I am prone to acne makes this so much worse!)

• I have only just accepted my Autism at 67!  What did it for me was retirement or perhaps losing my work. I was lucky enough to have a job that not only suited my Autism but also used the positive aspects of Autism to its full. It seems Autism only shows when the pressures of the allistic society break us. This might be noisy and unruly classrooms for autistic kids or a new boss who insists on us conforming. 

I find this so interesting!

Your story sounds ridiculously similar to mine. I was diagnosed a week ago, and still all new to all this so someone will be able to explain far more with experience and knowledge than I can! 

Aimeelou1992 said:

Why do you think as we get older we can’t seem to cope as well?

Accumulated trauma and the accumulated pressures of life.

For me it was my wife deciding after 20 years of not wanting a child that she now wanted one and the carefully constructed routines, comforts and financial stability were all about to be blown up if that happened. That was the trigger.

Aimeelou1992 said:

Why do you think a lot of adults who get diagnosed late seem to have got by with no obvious signs until something big happens to them as they get older?

We naturally develop coping techniques and those who are good at it skate by on the thin ice of our autism while those with more serious traits break through the ice into breakdowns much sooner and/or more often.

Because we have well developed coping mechanisms it takes something big to cause the overload into burnout or meltdown then it often all changes - we can't cope as well anymore and ilife just won't go back together the way it used to.

I guess one thae genie is out the bottle it is impossible tp put back in without help.

That would be my high level answers.